Both dying children and their families are treated with disrespect when the presumption of consent to cardiopulmonary resuscitation (CPR) applies to all hospitalized children, regardless of prognosis and the likely efficacy of CPR. This "opt-out" approach to CPR fails to appreciate the nuances of the special parent-child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children. The therapeutic goal of CPR is not merely to resume spontaneous circulation, but rather it is to provide circulation to vital organs to allow for treatment of the underlying proximal and distal etiologies of cardiopulmonary arrest. When the treating providers agree that attempting CPR is highly unlikely to achieve the therapeutic goal or will merely prolong dying, we should not burden parents with the decision to forgo CPR. Rather, physicians should carry the primary professional and moral responsibility for the decision and use a model of informed assent from parents, allowing for respectful disagreement. As emphasized in the palliative care literature, we recommend a directive and collaborative goal-oriented approach to conversations about limiting resuscitation, in which physicians provide explicit recommendations that are in alignment with the goals and hopes of the family and emphasize the therapeutic indications for CPR. Through this approach, we hope to help parents understand that "doing everything" for their dying child means providing medical therapies that ameliorate suffering and foster the intimacy of the parent-child relationship in the final days of a child's life, making the dying process more humane.
Shared decision-making in pediatrics is based on a trusting partnership between parents, clinicians, and sometimes patients, wherein all stakeholders explore values and weigh options. Within that framework, clinicians often have an obligation to provide guidance. We describe a range of ethically justifiable clinician directiveness that could be appropriate in helping families navigate serious pediatric illness. The presentation of "default" options and informed nondissent as potential strategies are discussed. The degree of clinician directiveness may vary even for decisions that are equally "shared." A myriad of factors affect how directive a clinician can or should be. Some of the most important factors are the degree of prognostic certainty and the family's desire for guidance, but others are important as well, such as the urgency of the decision; the relationship between the clinician, patient, and family; the degree of team consensus; and the burdens and benefits of therapy. Directiveness should be considered an important tool in a clinician's armamentarium and is one that can be used to support families in stressful and emotionally difficult situations.
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